Taxol and Herceptin only for stage 1 HER 2 positive?
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Kerensa, it's possible some of those issues were from pre-meds. Some people report getting headaches from the anti-nausea drugs, for example. I know we're all different, but what you report sounds pretty heavy for Taxol #1.
Is your onc going to gradually scale back pre-meds if you aren't having allergic reactions? That might help. Or maybe ask if the SEs are consistent with the pre-meds and, if so, perhaps there are alternatives.
Again, we're all different and speaking only for myself, after tx #1, I felt totally normal except for being a bit drowsy from Benadryl. The next week, they offered Allegra instead as it does not cause drowsiness. I imagine there are options for other stuff, too.
It does seem like our various providers have their individual approaches to all this, too, but mine seem pretty open to options about a lot of things. So I hope yours are, too, and there may be a solution for you. Good luck!
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Hello,
After reading through posts for some time, I finally got the courage to post. I was diagnosed in July, surgery in August, and chemo in September. Since my diagnosis I have spent countless hours researching, reading blogs and more researching on my diagnosis, treatment and recovery. The information I read from other survivors and those of us currently undergoing treatment have been a huge help.
I have had 4 treatments of Taxol and Herceptin. My side effects kicked in early on. Within the first week of treatment, i had severe abdominal pain and cramping. My side effects up to this week were focused mainly on digestive issues and body aches. I have not had much nausea. I have also experienced loss of appetite and heart burn. I have lost weight, cause I couldn't eat much. I generally love food but just couldn't eat it without the abdominal pain and diarrhea. I am happy to say that for the last couple of days, I have been able to eat real food! I hope that I can continue to eat after this weeks treatment. Now I have a new problem, I have getting an acne type rash on my neck and face and that is very annoying. Also, I rarely got sick before my diagnosis and am not used to slowing down but I find myself very tired often. Is this normal?
I have had 4 chemo treatments and still have all of my hair. I shed more then I usually do but no one would ever notice. I have a TON of hair normally. I would love to know if I have passed the critical time and I will probably not loose it completely. I have 8 more treatments to go and that is the part that I'm not sure I am prepared to deal with (even now)
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Dx 7/22/2014, IDC .5 &.6 cm + DCIS, Stage Ia, Grade 2, 0/5 nodes, ER+/PR+/HER2+
Surgery 8/11/2014 Lumpectomy (Left)
Chemotherapy 9/16/2014 Taxol
Targeted Therapy 09/15/2014 Herceptin
Radiation Therapy after Chemo
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I had the acne. My research at first indicate it was the steroids- which could absolutely be the issue. Then my steroids were lowered and I still had breakouts. I decided to do an oatmeal mask last night. While waiting for it to dry, I found a study on acne like eruptions related to treatment of cancer and human epidermal growth factor (e.g. Her2). The treatment for the facial acne/folliculitis was an oatmeal lotion and clindamycin. Other treatments were also suggested. So now I plan in using oatmeal after my cleanser to treat. It's much less harsh than acne treatments which proved almost ineffective to this type of acne. Check out bubzbeauty oatmeal cleanser routine on YouTube if interested. There were other studies discussing acne like eruptions with her2 treatment suggesting that regular acne treatment (benzoyl peroxide, etc) wouldn't help as much because the skin is already so sensitive and dry. Sorry I cannot link because I'm on the iPad. Hope it was helpful. Good luck
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Hi Everyone (want to answer all, but to numerous to mention!) -
About neuropathy, I think I am the queen of neuropathy! I saw a neurologist oncol about 2 weeks ago. Mine is tingling in my hands and feet, face, top of head, abdomen & upper back. The only place it is most annoying is my face. He said, chemo (for us girls, taxol) does effect the nervous system and can effect it in different parts of the body. He put me on Lyrica. Usually this med works on nerve pain, but we are trying it for numbness. I have no pain. Pls understand, in most cases, it effects just the hands and feet. So there is that old saying, "Don't cry because you have no shoes. Some people have not feet". Lyrica "maybe" has helped slightly. He said "time" is on my side. Really time is the healer of neuropathy and it can take a while.
I am 7 weeks today away from taxol! Yay!!
Today is a glorious day for me. I will be finished with radiation! Another Yay!! I really didn't get fatigue and although my boob is redder than the pink (because of edema) it started out with, it has held up with Eucrin and a prescribed cream the Dermatologist. I think the fatigue has stayed away because I walk on a treadmill everyday for 30 minutes and drink plenty of water.
For those who can't sleep while on TH, if you have passed several treatments, ask your MO if it is possible to lower the steroid. That should help you.
Love and blessings to all!
Marie
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Tabbygirl, I had an allergic reaction to the Taxol on my 1st treatment and went into anaphylactic shock. We were able to restart and finish the chemo though. I have actually been given MORE steroids to take going forward to ward off any more reactions to the Taxol. Thanks for your help, I am going to call my MO here in an hour when they open about my SE's.
I hope you all have a good Monday!
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Well today was #3, 1/4 of the way through! They increased some of the premeds for nausea, because of feeling so crappy last week. We also decided that its okay for me to be off work awhile. Hopefully that will be one less stress to worry about. I have disability insurance through my work so, I'm going to take advantage of the benefit. The weekend was a bit better. I enjoyed my granddaughters 3rd bday party. She was more interested in the playground then her cake or gifts.
The only new SE I have is that today I woke up itchy all over, hands, arms, legs, and back. Right now I'm trying so hard to not scratch my hands and top of my feet. Absolutely crazy, I cant think of anything new I have taken or lotion or anything.. The Nurse was going to check my vitamin D level to see if that is out of whack. I would have thought the benadryl they give as a premed would have taken care of it.
Kerensa, I had SE's early too, I'm hoping it gets better. Body aches, headache's and nausea/upset stomach are the my biggest concern mostly on the first 4 days after treatment and then it gets a little better. I hope it gets better for you too.
Congrats Marie on being done with Radiation!! A great milestone in this Journey. I cant wait to catch up to with you!
Wishing you all well. Its great to feel the support of this group!
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Myturn - I had an itchy rash on my hands and arm towards the end of my treatment. The dermatologist oncol gave me a cream which helped tremendously. Definitely tell your MO about it. It is probably from the steroid.
Good luck!
Marie
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Hi all,
Coming onto this forum is such a relief. Daniella, I know what you mean about the sleeplessness and the night sweats. From treatments 9-12 I wondered if I would ever sleep again. And that was so hard.. feeling like I can't even get some peace while sleeping? Sweet Jesus, if I don't have sleep, what's left? I am 2.5 weeks post treatment 12 now and the night sweats and hot flashes are getting better and I am sleeping a little better, too. And I'll take "a little" at this point. I hope it gets better for you as well.
Myturn, vent away. While I think having a positive attitude helps, I am fully on board with putting down the pom-poms because this whole situation is so crappy and miserable and depressing. It sucks. I'm with Tabbycat on the mental piece. It really messes with your mind. And I have to hold my tongue when people say, 'Oh, Stage One, you caught it so early that it's curable!' And then the smile freezes on their face in a maniacal sort of way.... Like it's not a big deal. Of course I am grateful I am not in a worse situation. But it's not 'fine' or 'ok'.
Kerensa, I lost a lot of hair, starting around week 4, to the point that it was coming out everywhere, all over everything-- landing in my water glass (or wine, haha), all over the couch, my clothes... whenever I hugged someone, it would be all over their shoulder. It was gross. And then it started getting patchy and thin in certain spots and just looked awful. My husband shaved it down to "fuzz" for me at around treatment 6 or 7 and that was a lot better. And just a few days ago, I actually felt the "breeze" in my hair. Fuzz is getting a little longer! I can't comment on what's normal for side effects but I do know all those things you mention are associated with Taxol. It's a rough go and once those steroids wear off, you really feel it, whether it's fatigue, nausea, headache, body aches or all of the above. And I didn't keep much in my chemo bag-- I iced hands and feet during Taxol infusion so that limited what I could do. Water, coffee, husband, iPad. I mainly closed my eyes during treatment due to Benadryl.
Thanks to all of you re: support on my echos. With 50% function, a cardiac effusion, and mitral valve regurgitation, I think I'm going to have to say good-bye to Herceptin. I still have 11 more rounds but if this echo on Oct 23 is as bad as my last one, I just can't continue the Herceptin. My MO wants to push, push, push, even at the expense of poor heart function but I'm only 40 and running and hiking and being outside is my passion. I'll just have to hope that the first 13 rounds were enough. The whole point of this is to get some semblance of my life back. It has been a rough couple weeks, thinking about this decision.
Wishing all of you well and holding you in my heart.
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I too had digestive issues. I lost 30 pounds getting down to just skin and bones. I weighed 86 pounds stripped. My last chemo was the end of March. I have since regained 5 pounds.
I had to stop the chemo. I am doing herceptin only.
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Lumary, welcome. I have ongoing digestive issues and body aches from the Taxol, too. The week after my first treatment was the worst, I felt like my whole body had been hit with a sledge hammer! The body aches aren't so bad now. Sometimes anything I eat makes my stomach cramp and makes for loose BM's but adjusting my diet to bland, watching the spice and salt, seems to help. Hope SE's ease up for you.
Mary, through with chemo AND rads! Amazing! I'm so happy for you. I'm sure you will find wonderful things to do with the time you won't be spending driving in to MSK!
Marineswife, continued prayers for you that your heart function will be okay. It is a big decision to have to make regarding continuing Herceptin or not but quality of life is a huge deal, especially since you are so young. I feel like I'm fighting cancer with all of this treatment to get back to the life I love and to feel like healthy me again. Good luck with your decision.
I hesitate to vent when I'm having a tough time because of all of the pressure to "stay positive." I do feel grateful and positive most of the time but from time to time it just feels so awful. I had my own meltdown while I was walking down the road to get my mail this afternoon. Started thinking about a neighbor who has a strong family history of BC. She had a prophylactic mastectomy, hysterectomy, and breast reconstruction in the last two years. I haven't told her about my BC, I just don't want the entire neighborhood to find out. Started sobbing wondering if I should talk to her or not. Also cried about all of the people who are telling me how lucky I am to be stage one, caught early. I AM truly grateful for all of the things that are going well, but I'm still so scared about the prospect of a recurrence. It is not logical since the doc said I am an ideal candidate for TH only but I wonder if I am getting enough chemo, although I was ready to argue my case for TH only before my MO proposed this plan! I'm tired of being tired, having to put on a positive happy face for work. I'm SO tired about wondering if and when ALL of my hair is going to fall out. I'm tired of seeing my scars and the area near my port that is getting more black and blue every week. Blechhh! As Marineswife said, sometimes it just messes with your mind! And, this concludes my pity party for today! If you are still reading, thanks for putting up with me!
Sending love and hugs to all of you. I would not want to go through this without you!
Sandy
P.S. When I got home and opened the mail, there was an envelope from Susan G. Komen that said "We WILL find a cure for breast cancer." More sobbing!
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Sandyloveslucy - I feel like you read my mind. Know you have a friend here, probably many friends here, feeling exactly the same way. I'm tired of it all. I have #7 tomorrow and I'm not over the last infusion. I'm tired of thinking what if this comes back, did I choose the right plan (even though I did the research and was prepared to fight for it if not offered), tired of waiting for the next SE. My port is bruised and looks very Frankenstein-ish. I'm tired of hiding in my house bc I don't want to talk about it and moreover, I don't dare want to get any germs that would delay my chemo. I'm with you sister...all the way. Xoxo
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Daniella, thanks from the bottom of my heart for your response! Growing up I was always praised for not complaining about things so it is really hard for me to admit when things feel so hard. My daughters, who are SO much smarter than their old Mom, encourage me to let it out here so others will feel free to do the same. Once again, they are right! xoxo back at ya!
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I finished my #5 treatment today! 7 more to go! Of course can't sleep tonight. I am going to have to break down and take the Lorazepam. Does anyone take anything to help them get to sleep? I have to get another mammo tomorrow to get ready for my radiation mapping. I can't wait till this is all behind me!
Also want to get a better idea of what to expect about the hair loss. Has anyone here kept their hair? I know it's varies from person to person. But it's treatment #5 and I haven't lost much hair (some shedding here and there). Can I keep having faith and hope that maybe I will be able to keep most of my hair?
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lumary, congratulations on getting through 5! I usually just take a Benadryl the night of treatment day and that has helped me fall asleep. But talk to your doc about what they recommend for you if the problem persists.
I just had TH #10 and still have a head of hair. It is much thinner than before and has been shedding consistently and evenly. Not sure if I will make it through the three weeks or so without getting bald patches. Good luck!
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Good Morning Sandy and All -
I finished taxol and had my last radiation Monday. I got to the light at the end of both tunnels! Now I continue on Herceptin only.
Ladies, I had the most wonderful chemo nurse on Monday administering my Herceptin. She had to be in her late 50's. She looked at the bag of herceptin hanging on the tree and said, this is the most respected drug developed. She was the first nurse to administer herceptin back in 1997. She traveled around the country and world promoting it with doctors. When it first came out, women with stage 4 cancer from all over the world came to NY begging for herceptin. Some were not even her2+. They were giving it to women with and without her2+. It only worked on her2+ women! She went on to tell me of a women who came in 20 years ago with stage 4 her2+ bc. She was told by her other doctors, she had the most 18 months to live. She has been getting herceptin every 3 weeks for 20 years!!! She saw her children graduate, then get married and now enjoying her grandchildren. She still today comes in every 3 weeks for her herceptin infusion. Remember, herceptin was intended for women with stage 4 and only recently in the mid 2000's was approved for us early stagers.
She also explained, we all have her2 genes in us - it's a protein that your heart needs. Herceptin may destroy too many her2 genes. That's why they give us the echo cardiogram. They keep a close eye on our heart function and monitor it closely. It may not mean you need to stop herceptin. Your MO may need to do an adjustment.
Also, there is a movie called Living Proof starring Harry Connig Jr as Dr Slamon who developed Herceptin. It is a fabulous movie. You can watch it on Netflix or order the dvd from your library.
85% of your medicine is your attitude. Just think of your taxol and herceptin as fighting a war. They are the marines and special forces!
I just had to share this with you all. We all have to be grateful that we live in an age when we have this wonderful medicine and technology. My MO said, there is so much research on bc being done and many more medicines are being developed for all types of bc.
Hang in there ladies. You will get through this. The weeks fly by. The se's may be there, but tolorable.
(((Hugs to you all)))
Marie
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Marie, thanks for sharing all that wonderful information. Herceptin really is a miracle for us. So many, many success stories. My breast surgeon's nurse is 61, has been stage IV for over 12 years, and has been living a basically normal and healthy life thanks to Herceptin. She told me this the day of my mx consult and I had to throw my arms around her for generously sharing that big ray of hope when I didn't yet know what shape I was in.
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You ladies have made me tear up this morning!
I do Taxol #2 today and hoping for NO more allergic reactions.
Sandyloves, hang in there sweety. I also try to be strong and only show people the side of me that isn't scared. Its hard to do sometimes and will take its toll on you if your not careful
Let it out, we are all here for you!My brain is tired so I'm running away for some downtime before treatment.
Have a happy day!
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Kerensa - when I was at my 2nd treatment, #12 seemed so far away. It was actually at the end of the official end of summer. No one cheered for the summer to end more than me! LOL The weeks do go by 1 by 1 and you do get to the finish line! When you get there, you'll say "Boy, that went quick!"
(((Hugs)))
Marie
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thanks MarieNJ. My last treatment is Christmas eve
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Kerensa75 - What a wonderful gift! We all know what you will be doing - Celebrating!!!!
Marie
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So it seems that after having TWO allergic reactions to Taxol today, they will be switching my drug to Abraxane (a type of taxol) but without anaphylactic shock. I will start it next week.
Oh how fun it all is
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Kerensa - I go to MSK in NYC. I have heard of others who had allergic reactions to Taxol and had to be put on another drug.
Good luck!
Marie
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I had #7 on Wednesday. The SEs come on quicker - fatigue, headaches, body aches, runny and bloody nose, the big D, etc, except a little worse every week. Maybe because my steroids have been reduced so much is the reason I'm feeling it all sooner. I used to make it until at least Friday night before the sore throat set it. No neuropathy or nail issues, thank God.
Marie - so happy for you. Thank you for sharing and being such an inspiration for me on this journey.
Sandy you're in the homestretch!!! Lumary - my doctor gave me lunesta to sleep. It's complete rubbish. You're better off with benedryl and a little Ativan. It makes me sleep during chemo so why not use it at home to get a decent night's rest!?! I've had the worst insomnia - I'm getting desperate anymore.
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wait...my sore throat is from the Taxol?
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DaniellaD, hang in there hun!
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I've gotten a sore throat after every infusion. My counts are very good, thank God. I gargle and it goes away within a couple days I attribute it to the post nasal drip from the constant runny nose caused by the herceptin. Or maybe it's just the taxol or herceptin gives me a sore throat. My dr's nurse was concerned about the sore throat thinking it was the start of a cold. I explained I get it every week and it's resolved with a little gargling, and he thought it was then no big deal.
Ugh...my aunt has the little one for a couple more hours. I wish I could nap...or do laundry...or just be productive. Instead I feel like a slug just lying down all day. I know I should take a walk but I really don't feel like it. Maybe later...
Hope everyone is doing well today.
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daniellaD, I hope you find some energy sweety. I have - 2 year old so I know it's hard. You got this rest while she us away and save your energy for your little one
Today was my first sore throat so I thought maybe I was just getting sick. I have had so much trouble with the Taxol, I can't wait to start my new drug next week! I have to call and check in with my nurse thus afternoon due to blurred vision
I'm going to take a nap now that I left work.
We can do this!!! Stay strong!
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I started to have trouble after TH #7. Lots of fatigue and shaky weak feeling. After #8 I almost fainted a few time the weakness was so bad. My MO gave me a week off to recover and that helped. It was a struggle to get through the last treatments. It is different for everyone so that is just my experience. I started to feel better about a week after last Taxol.
Bear in mind I am 'older' at 70 than most of you ladies and have arthritis and fibromyalgia which added to my overall symptoms.
Dee
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Kerensa, so sorry to hear about the allergic reaction. I hope the switch to a different drug will make things easier for you.
Daniella, I hear you on the increasing side effects. This week I have been so exhausted - I feel like I was hit by a truck. I also started having some tingling and numbness in my feet. Will continue with the B6 and L-Glutamine and hope to avoid full blown neuropathy. Each week brings a new surprise! They switched me from Tuesday to Monday for this week so I will go off to chemo today for #11, almost done!
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Hi All,
I have been finished with taxol since Aug 25th. I will always remember the date - because I couldn't wait for it to come! Taxol is accumulative. So the maximum se's you will have will be at your 12th and final treatment. Remember not all experience the same se's. Some more than others. While I was on taxol, I drank about 10 glasses of water a day and walked on my treadmill each day for 30 minutes. One was to flush the toxins out and the walking helped with fatigue. I took B6 everyday, but still ended up with neuropathy. Not a painful neuropathy - numbness and tingling. So maybe it could have been worse. I also got steroid pimples and rashes which all cleared up quickly with meds by the Dermatologist and the end of taxol. Take notes each week and report all se's to your MO. He/She may refer you to a specialist to help clear up your condition as you go along your journey.
I was told by the chemo nurse that taxol stays "active" in your system 1 month after you finish and "inactive" in your system for 6 months. So continue to drink drink drink! water! LOL
I am now on Herceptin only and it has been going very smoothly.
You will all get to the finish line - then celebrate!
Marie
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